I meant to ask this before but I forget to do stuff. On a recent visit to my GP she said that other patients with auto immune conditions kept a chart/blood book with results of their blood tests.

There was a suggestion that she was not being kept up to date with my various results from various consultants/hospitals and that me having a book / chart available may be the best way forward to refer to on appointments.

She suggested me making a spreadsheet for the various tests and updating that. But I was wondering if anyone else knows of these books/charts she was referring to?

I am thinking that she would prefer to just send me to local services, which I know lack the expertise. I was wondering if this was an excuse to apply pressure for a change in my treatment plan.

My gp told me that he did not have access to blood results taken by the hospital whereas the hospital had access to the results taken by the surgery. Perhaps this is why she has asked you to keep a record then she is more up to date.

I think it would be good practice if the specialists wrote to us after each appointment summarising their advice and any results - then that could be copied to our GPs - it happens with some renal specialists - much better way of working in co-production with us!

Actually I get copied into letters between most of my consultants and my GP. So I have a pretty good understanding. But it tends to be a summary of what has been discussed during a consultation and does not include blood results.

Coincidentally my local hospital is the one place where I have not been copied in on stuff. That is where I have been taken in emergencies. But in general most of the specialist consultants are at other locations.

Its just yet another reason why I do not think the local care option is the best solution for me. No expertise in my previously life threatening overlapping auto immune conditions and no notes. What an advertisement. The NHS should be all working together in my opinion. Not being split up into competing interests. We should be treated according to the condition not by what service may be the most cost effective (by whatever measurement), in a particular geographical boundary.

4 years agoHidden

They often do write to the GP - it is just that we don't get to see it unless we ask.

I too take methotrexate and have a book to write down the blood results that are taken each month. My local GP surgery works with the hospital I attend to monitor the bloods between hospital appointments. I ring up the surgery 3 days after bloods are taken and they give me the results over the phone which I record into the book on methotrexate. I find it a good way to know how things are with regards to my bloods and whether any inflamation occurs or whether my wbc has dropped. It is also handy incase I ever need it at any health appointments. Hope this helps. I see it that it is my body, and I want to take care of it and know what is going on and when I should be concerned. xx

Hi, yes it was the hospital rheumatology nurse straight who counselled me on methotrexate and then gave me the book to record the information. I saw the nurse straight after the consultant suggested methotrexate. Hope this helps. I find the book really beneficial as I can track my progress/decline.

4 years agoHidden

Try asking your pharmacist?

Hilariously - although I knew I was supposed to have a steroid card - I was never given one. After 6 years, when I was finally coming off the blessed things, and got the dose right down - the pharmacist popped out with a card one day, to tell me she thought as I was taking steroids I should have one....

It is indeed frustrating that the doctors involved in treating us do not always communicate between themselves or sometimes they do but they forget to copy us. So we need to be vigilant and keep asking for copies where they are not provided and then send those copies to the other specialists treating us. I'm doing that too, as many of the forum contributors.

As a note, you are entitled to this information - if you would like a copy of all the information a particular hospital holds about you, you can make a subject access request under the Data Protection Act where you can request a copy. Depending on the volume of information, you might be asked to cover the cost of copying (probably around £10-£20 for a few years worth of data). Each hospital is likely to have a data protection officer who usually deals with this, just check on their website under 'patient information' or something similar. If you're not sure, call them and ask - it is nothing special.

As I stated, I am copied in on my consultation notes from most hospitals I attend, but my local fix up shop seems to operate in a different manner. I asked my GP why I do not get copied in at my local hospital and she wrote me a note on headed paper to attempt to resolve the problem.

However for whatever reason I was told I would need to produce the GPs letter every single time I wanted to be copied on anything. I am sure that is not how it is meant to operate. But its the sort of scenario I am presented with.